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This started out as a Facebook post, but I quickly became aware that it was becoming a blog post so here it is:

#MeToo

Its been a pretty big thing hasn’t it. I would say an awful lot of my female friends put the #MeToo as their status at some point over the last few days. Some told of their experiences, some didn’t, some I suspect, just didn’t want to go there, and some maybe just didn’t want to add to the tidal wave of HashTag Me Too status’ bobbing about on the sea of Facebook or Twitter, because of memories, or what it symbolises to them, maybe incredibly exposing.

I found myself starting to write #Me Too and thinking of my own experiences. The one that sticks out in my mind the most was when I was in my mid 20’s. I was in Ireland, I was dancing/physical theatre-ing in a production we had taken over to a festival there. It was after one particular performance and we were out celebrating the success of it, I was wearing a not particularly revealing open necked shirt. I was talking to man who had seen the show, he complimented me on my feet (we were working barefoot, should have known then) and then reached over and casually touched my scar and wondered out loud what on ‘earth was it?’

Just to expand a bit more, my scar is keliod, that means that the top half of it healed with a lot of excess scar tissue, it was a lot more raised, red and bumpy than it is now (30 odd years does wonders for the healing process) and was probably a lot more noticeable than it is now. The keliods sit on my sternum, directly below my neck and centimeters from my breasts.

When I think about it I can still feel his touch, there was no, it was like, it was a direct poke to my chest, a sharp jab, it hurt, I would even go so far to say that the shock knocked the breath from my body. Then my body responded, entirely involuntary, entirely instinctively, my arms came up and I shoved him away and then the unthinkable happened…….. I apologised to him.

Yeah, that’s right: I. Apologised. To. Him. For shoving him away, when he hadn’t asked if he could touch what is an incredibly sensitive area of my body. I apologised and left, found my friends and rationalised that he was curious and maybe I was harsh.

I don’t want to go to much into my #Me Too experiences because yes there are many and this is a blog about living with a Congenital Heart Defect so not only do I have the female perspective I also have a CHD perspective and what this whole #Me Too campaign is about for me, is not just recognition to how vast it is, but also one about consent.

I hold my hand up and say yes there has been times that I’ve deliberately worn overtly low-cut tops and deliberately shown off my scar to garner attention, but it still doesn’t give anybody the right to maul me, it is my body.

I guess, this is where it has for many years been confusing for me. You see, when you’re a CHD patient, a lot of the procedures, tests and all operations mean that you are often found without your top on, in your underwear and incredibly exposed. As an adult I have noticed changes in how I am dealt with in these situations to how I was as a child. Now this may be a generational thing, now they may treat children differently, I don’t know, I can only go by my experiences.

As I child I learned that even if I didn’t want to I still had to take my top off to be examined by a series of Doctors and Consultants. That I was told when going through puberty that the Doctor isn’t interested in my body (or how I saw my own body) and ‘you’ve got nothing to look at anyway so just get on the couch.’ I felt often out of control and too compliant something I felt for a long time in my teens and quite possibly into my early 20’s.

I became very good at laying there putting my self on the ceiling, and as I write that I am amazed how wrong that sentence is. I shouldn’t know how to put myself on the ceiling at 8years old!!!! I feel there was a blurring of boundaries, I lost ownership of my body, it was seen as a defect that could be corrected (you can read further about that here) and I learned very quickly that I had to go through invasive and exposing situations – topless treadmill anyone? Fucking embarrassing when you’re 13 years old, you didn’t know what a treadmill exercise was, nobody told your mum or you what to expect, so you’re in bare feet, in your school uniform, with no top on because of all the wires attached to your body with a small mercy that there is a female nurse with you. Don’t worry I’ve done the same thing in my 20’s with a male nurse – wasn’t allowed a t-shirt on, but this time could keep my bra on, being older and more confident I brazened it out – still not the best of situations really is it? Having to brazen something out.

When you’re only seen as a defective heart carrier and not a human, you begin to think of your body as being the carrier bag of the defective heart. You don’t feel your body, you don’t think what it stands for, only that you’ve got a dodgy heart, the heart or rather what is wrong with your heart becomes the main thing. I have spent so many years not engaging with my own body that it’s no wonder I ended up, not really caring about it, allowing boundaries to be crossed because I thought it was ok and apologising for someone elses bad manners, for thinking I was wrong. I think it’s a heady mix, of attitude, experiences and yes privilege.

But one thing I’m not sure of, is it just #Me Too? Is it #You Too and it should be #Consent? Its happened to both men and women, boys and girls, prehaps it should be #Education? We need to educate our children, bring those feelings we have about our bodies into a dialogue, “how does it affect you?” In hospital it shouldn’t just be about modesty covers, or gowns, or chaperones, it should be about how is this feeling for you right now, more explanation into what’s going on, not just the procedure but the why of the procedure, and yes this takes time but if we have more children growing up with a sense of who they are, with ownership of their own bodies, of being able to articulate their feelings, wants and needs, to be curious in a healthy consenting way then maybe there won’t have to be a #Me Too and maybe we will have more CHD-ers being more confident about their own bodies, being more kinder to themselves and their bodies and being more accepting of their issues.

I’ve not been here much this year. My last post was a year ago, and that was a pretty emotional heartfelt post.

2016 proved not to be much better. You see Dad’s Cancer came back. This time it was his liver.

So everything that I wrote back on 31st December 2015 came back twice as large, twice as emotional, twice as frightening and twice as punchy. Like someone had rewound the tape (showing my age there 😉 ) and played it again only this time it was twice as LOUD!

I was aware that I was carrying that when we faced again, this bloody bastard unreasonable disease that insists on eating people up without thought, concern or awareness for whom it decides to try destroy in its consumption of life. I don’t want to talk too much about Cancer, my friend Fluff writes about it so much better than me and you can read her story of living with and surviving Breast Cancer here in her blog – http://baldybitesback.weebly.com/

All I can talk about is how it effected me. I found myself stretched. Stretched far beyond what I thought my capabilities were, I found myself under the most intolerable stress I have ever encountered. I found myself being my parent’s parent, my father’s counsellor, my mother’s carer, my parent’s referee, the big sister I am. I became of a huge bowl of water, very similar to the bowl that the tai-chi student visualises when they first learn the practice of tai-chi. I was carrying this huge bowl of water in my solar plexus and every knockback, negative encounter with a doctor or nurse, everything that could not be tolerated by others I absorbed and added it drop by drop to my bowl, hoping it wouldn’t spill over the edge.

As my father’s condition worsened, as his body shut down and he withdrew from us I quietly turned myself inside out, to try and become the perfect daughter. I found myself wearing more feminine clothes, (I am a bit of a tomboy forever in my jeans) I brushed his hair, manicured and filed his nails, talked about the Olympics, football, stupid things the cat had done. The odd times he did connect with us I laughed at his jokes, took his rage on the chin and made silent bargains with the air to get him through this.

You see, I know what it’s like, being in hospital, I know the dread, the loneliness, the vulnerability, the waiting. Waiting for the sun to rise, waiting for your loved ones to come through the door, waiting for doctor, waiting for the next test result , waiting to be well again, waiting for all this nightmare to stop. For me that is what hospital is, a ward of people waiting. And I realise now, I had become re-traumatised through my father’s experiences, I was re-living some of my own hospitalisations. What had made me empathic and sensitive to my dad’s needs, were my own needs at the time I was in that hospital bed, bewildered, frightened and lonely.

But again we are so lucky, Dad rallied, after complications, infection and pneumonia we were able to bring him home after a month and half hospital stay. And that’s when I realised that I was re-traumatised. I went back to my training and my work and ran into a brick wall. My body was so tired, my emotions were all over the place, and my anxiety was through the roof. I didn’t know what was my stuff and what was my dad’s stuff. Everything was intertwined and I was suffocating. I needed to separate myself from it. It’s now 4 months of being kind to myself, resting, withdrawing from the social scene when I needed to, being, to put it bluntly, selfish, I am now feeling ready to be curious about the world once more.

So have a peaceful New Year. I am not going to declare any grand hopes and wishes for 2017, the world is in change and with change comes loss and with loss comes grief, and with grief a door that opens….

Its nineteen minutes past one on the first morning of 2015, me you and mum have seen in the new year and I wonder if it’s our last.

Today we went to the hospital where you had a small medical procedure to find out why you are so badly anaemic and it wasn’t good news.

You have a ball of stuff growing in your colon, and they are pushing you in for an emergency body scan next week to see if its spread to your liver.

Funny we always thought that your lungs would pack up first because of the many fecking cigars you smoke.

I know you’re scared, I know mum is scared and I know I’m scared too. I know that it is tapping away at this deepest fear that I have.

You see I always thought you would be here, I never thought you could die, you were going to be you and mum was going to be mum and you would be there for ever, sitting in a chair enjoying a lively retirement with your grandchildren, being wise and funny.

The ironic thing is that I’m only just getting to know you, to realise that you are part of my story too. The traits and characteristics we share: Your pythonesc sense of humour, your mellowness as you’ve aged, your hearty laugh, your patientce and creativity.

We have our similarities, the love of a drink, banter, being silly and childish; how many one fingered salutes can I find in my back pocket??

What am I going to do with out you dad? ? – who am I going to turn to when I need resesurance about my car or driving a certain route or doing something technical, who will do that now?

I know I have caused you endless worry, my poor choices in relationships that leave me on my own, you were my sounding board when I realised the partner space in my life was yet again empty…

I’m sorry I never gave you grandchildren, you would make a fab granddad. I’m sorry you never got to walk me down the aisle at whatever crazy wedding I would have planned. I’m sorry you never got to make that father of the bride speech. I’m sorry, so sorry. I regret so much not letting you make a speech at my 40th birthday, in my paranoid control freakery behaviour, I only thought about the attention that would come my way from that, I didn’t think about you or your needs as a dad to stand up infront of my friends and say something good and how proud you are of me. That was your moment and not mine and I am so sorry I never let you have it.

All those other dad daughter things that we haven’t done, bonding with my life partner, holding your first grandchild, coming over for Sunday dinner, coming over to my house for Christmas, New Year. All things we should have done but we didn’t because I took this moment for granted, I always thought you would be here.

I’m sorry I failed you as a daughter dad. But in that failiure I recognise a triumph. That you dad and you mum have brought up a daughter that gone her own way. That I sought a career and changed that career. You taught me independence, integrity of being myself, and following through with my actions and convictions and not being afraid to pay the consequences of them. To follow my nose, to not be bought, to enjoy the good times.

Your daughter didn’t turn out the way you expected but she’s strong and kind and believes that it will be alright in end. It will dad, it really will.

Painfully and strangely thin. I remember looking in the mirror and being able to see my chest bones and thinking this really isn’t right.

It wasn’t deliberate, I was eating, probably not enough, I agree, but I certainly wasn’t deliberately starving myself. Honest. I was very, very stressed at the time, lots of things were overwhelming me, life had got the upper hand and for the first time I didn’t know what to do.

It wasn’t just the weight loss there were other symptoms too.

As things stabilised so did my weight and I didn’t think anything of it. Until it started tipping the other way and then I felt that I had been hit over the head with a brick.

Around 4 years ago, there were times I would get up to go to work, make it to the bathroom door and just turn around and crawl back under the duvet. Putting one foot in front of the other was painful, not painful in an emotional way, but painful in a physical way. It was how I would imagine walking on knives to be like. Days when I got up ‘normally’ I would still spend 10minutes on the side of the bed working my feet, rubbing and stretching them believing that many years of dance, stupid shoes and age were catching up on me.

My housemate mentioned that I was taking an awful lot of time off work and was surprised that I didn’t have HR on my back. Up until then I hadn’t realised I was calling in sick or turning up late quite so regularly.

Cold I was so bloody cold, one summer I didn’t even get to wear any summer clothes, its was a typically British summer but pleasant enough outside, but nope, I was wearing my winter jumper and sometimes a scarf as well!! It was around this time that I watched a chat show with Robin Williams talking about his OHS and he mentioned that one of his symptoms before he had surgery was that he felt he was winding down like a like clockwork toy….

So I did. She took my tiredness very seriously. So began six months or so of various tests, at one point she speculated that maybe another hole had opened up in my heart, the terror that idea struck in me was unfathomable. The test is quite funny, they push tiny air bubbles into your blood stream then make you hold your nose and blow down it while they are monitoring the flow of blood through your heart to see if the bubbles actually move through the heart chambers as they should or whether they skip over middle of the heart and end up on the other side thus proving that there is a hole.

No hole. Phew!

Other tests, blood tests, the dreaded bicycle stress test, ECG, Echocardiogram, and finally an Angiogram which is a story in itself I may tell one day.

The only results that had changed told them that the leak in my Aortic Valve was worse than they thought but not bad enough to warrant the symptoms I was presenting.

So I went home, struggled with my weight gain which was worsening, damaging my confidence to dance (which I was still trying to do), my mood was dismal, and I felt I didn’t know my own body at all. All my doctor at the time would say was ‘its your age’ which made me feel I was complaining about nothing.

I moved house signed on with a new doctor had all the blood tests that new surgeries put on you when they find out you have a CHD and I was called in.

The Dr. read me a list out asking me if I suffered with any of these symptoms.

Changes in the menstrual cycle. – Boy, from being the regular as clockwork woman to I don’t even have a fucking clue about my own fertility or body anymore. Check.

Dry hair and hair loss. – My housemate often complained loudly about the amount of my hair she found in the shower, um sorry yes that is me. Check.

Dry skin. – Thought I was getting old. Check.

Fatigue. – Check, check and check again!

Greater sensitivity to cold. – Fancy spending summer in your winter woolies and moaning about how cold it is to your friend in a T-shirt. Check

Slow heart rate. – Thought it was the CHD. Check.

Unexplained weight gain. – Sob. Check.

Muscle/joint pain. – Check.

Puffy body/face. – Check.

You have, he told me, a underactive Thyroid gland (Hypothyroidism) and it had probably been underactive for a good few years.

Oh. It wasn’t anything, anything, anything to do with having a Congenital Heart Problem.

So, I’ve had Hypothyroidism for two years now. It is incredibly common.

The thyroid gland in the neck is important for regulating the body’s metabolism. With an underactive thyroid the gland does not make enough of the thyroid hormone called thyroxine. So I now take Levothyroxine to build up the thyroxine levels.

The Dr. even suggested that when I was painfully thin, my thyroid was overactive as the anxiety and insomnia and weight loss were all symptoms of that, and some thyroids do see-saw from one extreme to the other.

My feet have stopped hurting in the morning, though some days I have muscle/joint pain – but it’s bearable, I hardly have days were I can’t get out of bed, I am slowly beginning to feel more at home in my own body.

How do I feel? I feel less crazy…. 😉 I still don’t like the weight gain or my puffy face. Having Hypothyroidism means its is very, very difficult to lose the weight once it’s there. I hate it to tell you the truth, it will never sit well with me.

But on the plus side I get all my prescriptions free so all the medication that I am on for the CHD is free, which is a silver lining if you remember my ranty blog about paying for my prescriptions.

Funny, it never even entered my head that I could get another illness, I had a CHD I couldn’t possibly get ill from anything else. But there you have it. I can. You can. It’s not all about the CHD.

I’ve had a lot of blood tests recently. A lot. You think by now I would have got used to them. Nah… I still hate them, I still get wound up by them and I still would rather not have one thank you.

But being on the meds that I am, it requires me to have regular blood tests to check that my kidneys are still functioning well and coping with the extra work that the meds are putting on them.

I’ve also signed up to a new GP Practice recently, and of course with my medical history I get a call and have all these wonderful appointments made for me to check everything out, blood pressure, weight, pulse, meds, blood, kidneys, etc, etc, etc. I should be grateful really that they are taking seriously, my heart issues – (As an aside, I like the word ‘issue’, it’s quite weighty and not so negative as ‘problems’, it also gives hope, hope that the issue can be overcome or lived with positively).

Anyway, I am grateful that they are taking my heart issues seriously and it was during this new patient review that I had a blood test and they found out I was borderline anemic.

I probably have been for some time as my eating habits over the last 6 months were quite appalling, living off takeaways and crisps. I’ve been a pescetarian for 26 years and I guess it all adds up that my iron levels are a little low. So it was suggested that I take an over the counter iron supplement. With the other meds I take I have to take the iron supplement in the evening and then eat a tomato…. I kid you not, the pharmacist recommended eating a tomato or a satsuma with the supplement to help my body absorb the iron. I’ve done weirder things in the name of keeping myself healthy so popping a cherry tomato in my mouth every evening isn’t too much bother.

But blood tests do bother me. Not as much as they used to, when I was younger, but I still feel the knot in my stomach every time I need one. Right up until recently I would shake and cry. It’s not just blood tests, any form of injection would yield the same result. How embarrassing it has been, being the youngest person in the flu jab clinic in full view of the other patients, sobbing my eyes out while a helpful doctor or nurse injects me with flu vaccine and you want to know the stupid thing – they really didn’t hurt, just a slight feeling of an ache in the crux of my arm.

The first blood test I remember was before my second operation. I was 6years old. I remember having to squeeze a sponge to prepare the vein and then watching the needle go into my arm and watching the blood go up into the syringe. It was fascinating. Everyone commented on how brave I was, but I just remember watching the purple-red (very deoxygenated blood, I was quite ill then) swirl into the plastic syringe thinking “Wow! That comes from me” and “Deoxygenated blood is blue!”

So what happened? Why from that fascinated 6year old did I go to quivering, snotting hysterical wreck. It was an incident with a very gruff doctor, who had little experience with children, who had to take my blood the day I arrived at Papworth, the day I found out that I was having an operation.

His technique was pretty brutal, I was quite happy at first, held my arm out obediently thinking I would find it interesting but something was not right and the pain was unbelievable for a child to withstand. He pulled out the needle and then stuck it in again and he had to take a lot of blood, much more than I had previously given. I buckled. I kicked and screamed and yelled and he had the nerve to tell my mother off for not controlling me! In the end the only way he could take it was with me straddled over my mother’s lap, her holding me down and him grabbing my arm making it rigid and therefore almost impossible to take blood without bruising and without pain.

After that. I freaked out every time a doctor or a nurse came round to take blood or give me an injection. I refused pain relief after the operation because the higher doses came as injections, I was more terrified of the needles than the pain I was in and made do with the medicine.

So yes, many a time I have sat silently with tears rolling down my face as blood is taken or an injection given, and I’ve felt so stupid as I’ve made it become this huge fuss and then I felt even more stupid as I realised while the procedure was happening that, actually, it didn’t hurt that much.

How do I do cope now. I’m up front with anyone who is going to jab me with a needle, I explain that I can’t see the needle or the syringe before the deed is done. I make a point of looking the person in the eye (just incase I accidentally see the syringe on the table) and explain that as they are preparing my arm etc I have to look at the ceiling. I then use relaxation techniques – mainly I concentrate on my breath, breathing in and slowly breathing out when I feel the needle go in, I also make an effort to relax my arm.

Techniques for taking blood have also changed in the last 40 years, I was surprised a few years ago that the arm is placed downwards on a pillow rather than on a table, using gravity I suppose, but it’s much easier to relax the arm this way and in hospitals they have special chairs that hold your arm in the correct position much easier.

So hows the iron count? Fine, latest results back today are all normal and no action needed, worth taking a supplement and eating a tomato every night for I think!

It feels strange but exciting to be back. I have no idea if anyone is still listening after all these months but I think I’ll just chat myself into a corner if you don’t mind the noise.

So six months of silence, six long months of not having the (excuse the pun) heart to write. Or rather write anything bloggish and you know what, I haven’t even tried. Not once. Not one itty bitty teensy weeny ounce of trying to get anything written about what had been happening to me.

So what did happen?

I’ve been homeless. Even as I type the word I still can’t quite comprehend what has happened to me over the last six months from November til May.

I won’t go into all the detail, it was nobodies fault, it was just a set of extraordinary circumstances that happened at once and the end result was that I was left with nowhere to live. Now being the resourceful person I am I didn’t think I would be homeless for long. 3 weeks tops I told myself and everyone else. I’ll just need to kip here for a short time. Bloody hell I bet my friends didn’t know what hit them.

There’s a housing crisis brewing in Bristol and it’s not funny. I work part-time for an accountant, I have savings, I am also training to be a psychotherapist. I would go to flat view after flat view. I turned up on time, was friendly, looked professional, but when I said the words I work part-time – shutters would come down, faces glazed over and false pleasantries were exchanged. Even when I turned up with a guarantor no one would take me on and ALL of them never bothered to enquire actually how much I earned. For all they know I could earn quite a lot of money in my part-time job. Funny how three words ‘Part. Time. Worker.’ gives rise to a massive judgement that you won’t be able to pay your way. in the end it was this judgement that would drive me crazy.

I changed tack, I looked for house shares privately rented. I had such an understanding landlady in my last home, who never flinched when I said I was being made redundant and that I was starting to train in my chosen new career I’m sure I could find another. I still paid rent on time, I kept up with bills and surprised myself how little I could actually live on.

So I found the place I live now. Even then after being chosen (they chose me!!) I found out that it was agency managed and the hoops I had to jump through to secure my place. Even though I was bringing double of what the rent actually costs a month they still didn’t think I could afford the place as I was working part-time…. What discrimination is that?? What the fuck is going on there?? Where do we go? What if I was in real trouble, what if I didn’t have 3 amazing sentinels who opened their homes to me? I was one step away from sleeping in the car, one step away from losing everything. This, I now understand, is how easy it is to become homeless….

Never again will I judge a homeless person, it could really not be their ‘fault’ yes, that now makes me a soft touch to beggars on the street but I don’t care, I give my spare change to someone asking for money to get into a homeless shelter for the night, I know how easy it is to fall that far.

So there it was, if you work part-time, if you are trying to make something of yourself, if you find yourself wanting, don’t ever become homeless, the £180 agency fee for what I can see to send 3 emails equals to £60 an email, easy cash.

Now I’m in my new home. I live with people I’m still trying to get to know. The place is peaceful, the people kind, there is a healing feel to the space. Its crafty and bakey and arty and I am beginning to relax. Though the first 4 weeks I completely fell apart. I couldn’t stop crying, I threw more stuff away, I had an allergic reaction to my ‘things’ that I hadn’t seen for so long. I hated ALL the clothes I owned – whose clothes were in the closet? Not mine, mine are in the suitcase I’ve been living out of for the last 6 months. But slowly, slowly I’m beginning to feel more ‘me’. I’ve stopped saving boxes for packing though I still when anybody asks, say “at the moment I’m living in…… ” which has only just been pointed out to me. I’m hoping that will cease soon.

Looking back over the last six months I’m staggered at how completely and utterly mad that situation was, and now the self-criticism is kicking in. What the fuck was I thinking? Why did I allow that to go on so long? Why didn’t I defer my course and go get a full-time job and save? Why didn’t I just give up the idea of my training to be a therapist and just get on with a nice office job? But in my defence I was too deeply in it to see the sense, it was always next week I’ll get that flat and so on.

There are three people who fed into my innate sense of keeping going, three people I will never ever be able to thank enough. Three people who when I felt abandoned by others stood by me. It is interesting that I started to feel taboo, Yep this is kinda my stuff, but I did feel a kind of social pariah when I was homeless. I felt I wasn’t able to talk about how it felt, because I’d brought it on myself. Ever tried to be invisible in somebody elses home? It’s not easy however welcome you are made to feel I always felt that I was outstaying my welcome. I felt I wasn’t suitable person to have around, I was now a flakey person and yes I became flakey, ( I was incredibly stressed trying to carry on with my course, ever tried writing your own psychobiography when you’re homeless – it’s a mammoth emotional task even when you have stability around you and when you are in a place of feeling real fear, fear that you’re going to piss off the person you are staying with that they kick you out, it’s down right nearly impossible…) and all that made me sad. I miss the contact. But understand that everyone’s life is busy and full.

So three people who watched out for me, who believed in me, that has not happened for a long time, having people believe in ME. That has been such an amazing thing when my own self belief was thrashing around in a sea of fear, these three people said, “we will help you, come and live in our spare rooms, because we believe that what you are doing is important.” For that I am eternally grateful, thankful and yes, ashamed, ashamed and grateful that I had to rely on those people. I’m usually the self-sufficient one, the one who can provide its been a massive learning curve.

So now hopefully I can be a little less flakey, a bit more organised and though the next year is going to be financially tougher (the belt is being pulled tighter still) I’ll get to have some fun times again.

That’s where I’ve been and what’s all this to do with CHD? Nothing, nothing at all. I’ve always said I’m more than my heart condition, but I think this was a bloody stupid way of proving that…. 😉

Took off my favourite fleece yesterday and rediscovered the tag at the back…

Yes… Yes I am….

Actually considering the events of the past month, I just want the ordinary thank you, you know, the ordinary where I have a place to dwell and a nice job and go on holiday once a year…. Yeah, that would be nice….